Chris Hohl- A day in the life of pediatric palliative care

Published by: michadmin on January 30th, 2013

I had been off service for a few weeks so was not sure what to expect on my return.  The Pediatric Palliative Care service had been fairly busy my last week on service with a string of several new consults, so I knew first day back can always be a long day.

I first met up with Erin, our pediatric palliative care nurse clinician, who ensures continuity between the 4 of us physicians who alternate covering the program.  It takes approximately one hour for me to get a “Cole’s notes” version of the recent consults, a brief update on patients that we are/were actively following, and any significant non-medical developments with the department/teaching/etc.

There were only a few patients on the wards that we were following, all under different services and on different wards.  The lines between “palliative care” and “symptom management” become quite blurred, especially in pediatric populations, and thus our service has been evolving into one of helping manage symptoms in medically complex patients.  To complicate matters, there is little to no literary evidence behind many of these symptom management questions, which often require new ideas, thinking “outside the box”, or transposing treatments from one area into another.  While one patient on the ward was symptomatically stable, two of them were having significant distressing symptoms that we were not adequately getting on top of.  We were able to get significantly better symptom control of one patient with a single medication change.  However, the other patient continued to pose difficulties, despite a multidisciplinary approach involving several specialties.  Even literature searches and communication with international “super specialists” did not provide any new solutions.  For families in these circumstances, sometimes efforts at making things better, even if unsuccessful, are as important as the successes.

Our program also follows families trying to remain at home as patients near the end-of-life.  We are one of the few services that performs home visits to try and facilitate this goal.  After finishing on the ward, we ventured to a home with a family attempting to remain at home through the latter stages of their child’s terminal illness.  Home visits are truly a unique experience as a health practitioner, as you are now on the “family’s turf”.  Care has different complexities as we try to simplify medication cocktails for the families, yet keep them diverse enough to treat all that can be reasonably anticipated without the convenience of an in-house pharmacy.  Medication choices are often limited as routes of administration are less invasive in a home environment.

Also in the home, there are often extended family members visiting.  Being the stranger in this environment, it is always necessary to tread carefully with discussions and answering questions as the family dynamics will greatly impact how these conversations take place.  As one would predict, there is often a great deal of stress and tension in such a situation with a dying child, and it is crucial to try and diffuse some of this tension instead of adding to it.  Listening becomes more important at times than speaking.

After making some minor changes and calling in a new prescription for the family following the home visit, it was time to swing by the NICU where a newborn was recently diagnosed with a non-survivable condition.  Given this life-changing news, the family was wanting to get home as soon as possible.  While some of the paperwork would need to wait untill the next day as offices were now closed, we could at least discuss the care plan with the family.  This includes what to potentially expect (including life span prognostication/guess-timation), current care needs, possible end-of-life changes, potential symptoms including medications to treat them, overall goals/expectations of care, and after-death preparation.  We then formalize these discussions into a care plan for their health care providers to ensure consitency of care.

Time willing, I then work on research papers/projects that are ongoing and/or put together teaching sessions for either pediatric residents or palliative care fellows/residents rotating through palliative medicine.